MND-Net - Network for Motoneuron Diseases
Motoneuron Diseases, specifically Amyotrophic Lateralsclerosis (ALS) are diseases, with comparatively high incidence rates (2.5-3 per 1000) and a low prevalence rate (6000-8000 patients in Germany). Therefore a long-term collaboration of all relevant German ALS/MND groups is necessary to develop diagnostics and therapeutics of these diseases in an internationally competitive way.
In the frame work of the consortium we establish a collaboration of the important German Centers for Motoneuron Diseases (ALS) and build up a German Register. With the support of this register will develop genetic and proteomic biomarkers, establish a tissue bank, measure patient reported outcomes (ePROs) in an internet-based manner, develop the basis for therapeutical interventional studies and analyze the psychosocial consequences of these rare orphan diseases. Also, we will support groups of basic scientists with in vivo and in vitro models. We will train young scientists, in particular clinician scientists and we will build up a keratinocytes-based IPS cell bank resource.
The biomarker and genetic studies are the basis of development of new diagnostic and therapeutical approaches. The studies on nutrition and psychosocial consequences will also be the basis for interventional studies. The patient reported outcome project (ePROs) is able to evaluate these projects. The tissue and IPS cell bank, the in vitro and in vivo models will support all participants of the network for translational and basic science projects.
- Aufbau eines gemonitorten Registers als Grundlage für eine Sammlung von Biomaterialien nach Standard Operating Procedures (Prof. A. Ludolph und Dr. D. Lulé, Ulm).
- Durchführung von Studien zu Subphenotypen und Durchführung von klinischen Interventionsstudien (Prof. A. Ludolph, Ulm).
- Aufbau einer Datenbasis zu coping Mechanismen, Bereitschaft zu assistiertem Suizid und Euthanasie in dieser Patientenpopulation (Prof. A. Ludolph, Ulm).
- Aufbau eines Registers zur Ernährungssituation des Patienten; Schwerpunkt Katabolismus sowie optimale Versorgung durch eine percutane endoskopische Gastrostomie (Prof. Thomas Meyer, Berlin).
- Aufbau von Gewebebanken (Prof. D. Thal, Ulm, Prof. J. Weis, Aachen)).
- Aufbau einer Bank von IPS Zellen; gewonnen aus Keratinozyten und Fibroblasten (Prof. T. Böckers, Ulm).
- Auf- und Ausbau (dezentral und zentral) von transgenen Tierlinien mit Motoneuronphenotyp (Prof. M. Sendtner, Würzburg).
- Entwicklung nicht-invasiver Biomarker (Prof. R. Dengler, Hannover)
Prof. Dr. Jochen Weishaupt
Universität Ulm
Universitätsklinikum – Abt. Neurologie
Oberer Eselsberg 45
89081 Ulm
Phone: 0731 177-1201